Return Newbie!

[DebbiK]

Hi everyone,

I used to belong to Sjogrens World a few years back unfortunately life got in the way not to mention a computer crash and I was away for awhile. I live in Wisconsin and was diagnosed with Primary Sjogrens in 2001 as well as Undifferentiated Mixed Connective Tissue Disease. My doctor describes it as being on a teeter totter between Lupus and Rheumatoid Arthritis. I have the antibodies for both however I am in the middle and could swing either way at any time.

I currently do not take any medications except for Aleve when things get bad. The plaquenil made me very sick as did some of the other drugs. I have stayed away from the methotrexate because it seems to be pretty harsh on the body and I don't always respond well to drugs like that. I've started experiencing more of the stomach problems in the last year and have decided to go see a new rheumy because my old one "said" she could deal with the SJS but really didn't. The fatique is definitely there and it is hard sometimes to get my work done and as for housework well enough said I look forward to being back on the boards and seeing what is new out there to help those of us with SJS.

Warmest regards,

Deb

[Narablueeyes]

Welcome back DebbiK!

[gold55]

Hi Deb,
It's nice to hear from someone else who is teeter tottering between diseases.....they're not sure about mine either other than the SJS antibodies (SSA only) which can also be Lupus antibodies.  One of my rheumys thinks I will get RA and the other one isn't sure.  So, right now I do the eye and mouth and skin moisture extras and deal with the pain or use Ibuprofen as little as possible.  My second rheumy did give me liquid voltaren for my big toe joints (I definitely have osteo in both).  The nerve pain is off and on throughout my body but most noticeable in my hands now.

Welcome back!
Jill

[Joe S.]

Welcome Back Neighbor (MN/WI). I am not able to take traditional meds for this so I use Alternatives I have posted some in my signature.

[Patze]

Hi DebbiK and welcome back from me too!


Patze

[Meld256]

Hello, DebbiK

Welcome back! 

[Pisces24]

As for your stomach, have you tried probiotics or yogurt?
A dr put me on maintenance antibiotics for awhile and it messed up the "good germs" in my tummy. So now I take a pill probitoc (FloGen3) as I don't like yogurt or buttermilk. I has helpd my stomach quiet down considerably. Before I'd be going along fine and Wham get diarrehha out of the blue for no reason I could discern.  Glad that has settled it.

I can usually feel the fatigue coming on so am able to head it off so to speak and sleep in on a weekend. But I did have a time that I didn't and it just wiped me out - I slept pretty much a whole day "course dr said I had a sinus infection too.". It is hard to learn to listen to your body.

Yes if the dr you have isn't working out, go to another one. It took me 6 yrs to get a firm diagnosis and a bunch of drs. What we have definitely doesn't fit the "textbook" symptoms so we have to look for drs that will do the work. I go to a research/teaching hospital and am happy there with all my -ologists. If there is one in your area, I would recommend it.
Good Luck!

[smallfry]

Hi
Nice to meet you and welcome back.

Cheryl